JUST A couple of glasses of wine were enough to give Adina Farmaner almost instant hangovers. And while she’d never been a big drinker, “at university I used to be able to party with the best of them,” she explains. “But half an hour after drinking I felt sick and really rough. I couldn’t hold my drink any more.”
Eventually Farmaner, a marketing manager, went to the doctor. Her tests showed that while there was nothing wrong with her gut or her liver, her blood levels of bilirubin — a greenish-brown pigment released from dead red blood cells — were raised. The doctor diagnosed Gilbert’s syndrome.
This is far from being an obscure liver disorder — an estimated 5-7 per cent of the population is thought to have Gilbert’s syndrome (or unconjugated hyperbilirubinaemia). The problem is that the symptoms — which include headache, fatigue, abdominal pain, nausea, diarrhoea, constipation and loss of appetite — are so commonplace that many people reading this might think they have the condition.
In fact, many who have the condition may have no symptoms. This can cause difficulties with diagnosis, says Dr James Dooley, a consultant hepatologist at the Royal Free Hospital in London. “A fair proportion of ‘healthy’ people have intermittent symptoms including tiredness, and abdominal discomfort. But the vast majority don’t have any,” he says. “If a patient had a significant symptom, I would consider other causes.”
Gilbert’s won’t get worse, won’t kill you and won’t lead to any other illness. Indeed, there is some recent research which shows that having high levels of bilirubin may help to prevent heart attacks. Conventional liver function tests will be normal.
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However, some people with Gilbert’s, like Adina Farmaner, tell a different story. Seven years from diagnosis, she has noticed her skin tone is slightly more yellow. Once, after using spray paint, she was violently ill.
“There are times when the doctor has signed me off from work — I have had jaundice, diarrhoea, sharp stabbing pains just below the right side of my ribcage and I’m so exhausted my arms and hands shake. I look very ill.”
People with GS have a damaged gene that leaves them short of a specific detoxification enzyme in the liver, which helps in the breakdown and excretion of bilirubin.
Small amounts of bilirubin are normally present in the blood, but in people with Gilbert’s, levels are raised, which can lead to the symptoms.
The missing enzyme also helps the liver to process toxins, particularly chemical fumes and the chemicals in some drugs. Consequently, people with GS may have difficulty detoxifying some drugs and substances, such as paint.
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GS is inherited. It is present from birth but usually lies dormant until early adulthood. James Soady, 67, a retired headmaster from Hampshire, developed it at 21 and has passed it on to one of his three daughters. His father had GS too.
“I get a bit yellow and have bouts of nausea,” he says. “The older I’ve got the more benign Gilbert’s has become. But whenever I get a cold or infection, I start to feel very nauseous and have a pain in my right side.”
Adina Farmaner’s experience, combined with the lack of information and what she sees as the unsympathetic attitude of some doctors, prompted her to set up an advice website, Action on Gilbert’s syndrome, two years ago.
“The biggest problem is the lack of information,” she says. “Doctors don’t have enough to give people, and they feel it’s not important as it’s not going to kill you and they can’t give you any pills for it. I spend a great deal of time reassuring people that although they will suffer with certain symptoms — which you can control when you are know how — they aren’t going to get worse or die.”
Anyone with obvious liver symptoms — of which jaundice is the most obvious — should see their GP. There is no test for GS, but raised bilirubin levels will be evident in the blood and when all other diagnoses have been eliminated, all that’s left is Gilbert’s syndrome. Most GPs refer people with raised bilirubin levels to a specialist and once a diagnosis of Gilbert’s syndrome is made, reassurance is the only treatment.
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The important thing is to tell patients that this is not a serious condition, says Dr James Neuberger, a consultant hepatologist at Queen Elizabeth Hospital, Birmingham. “Patients are usually relieved when I tell them they have Gilbert’s. It’s nice to have a label. You know what it is and you stop worrying whether there’s something wrong with your liver.
“It’s not alcohol, it’s not cancer, it’s not infectious and you are not going to pass it on. You can live your life as normal, avoiding situations where Gilbert’s may cause a problem. It’s essential to live within the bounds of common sense, but there’s not a lot you can do.”
Adina Farmaner disagrees. Her website and newsletter are full of information about the condition, tips on what to eat, what to avoid and how to spring-clean your liver. It’s a mixture of hard science and anecdotal advice, the result of her own research.
She advises people with GS to get a good night’s sleep, have lots of small regular meals with complex carbohydrates and fresh vegetables, such as broccoli, cauliflower and beetroot, and to cut back on the usual culprits — fried and fatty foods, alcohol and caffeine.
Doctors are more sanguine. The consultant who diagnosed the syndrome in James Soady, who for months had not touched a drop of alcohol, took him for a celebratory drink. “It is a matter of reassuring and discharging,” says Dr Neuberger.
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“One doesn’t want to turn people into patients. There is a huge range — many people go around without noticing anything is wrong and that’s great. But there are people with symptoms who worry something might be wrong.”
TELLTALE SIGNS
SYMPTOMS may include headache, fatigue, abdominal pain, nausea, diarrhoea, constipation and loss of appetite. However, many people with Gilbert’s syndrome have no symptoms at all.
There is no specific test for the syndrome, but if there is evidence of raised bilirubin levels in the blood, and all other diagnoses have been eliminated, it may be suggested. (Most GPs will refer people with raised bilirubin levels to a specialist.) The condition is regarded as benign, and there is no medical treatment. Anyone with obvious liver symptoms — such as jaundice — should see their GP.
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Action on Gilbert’s syndrome, PO Box 37848, London, SE23 2WX; 0845 2262394. www.gilbertssyndrome.org.uk Gilbert’s Web, www.gilbertsweb.co.uk British Liver Trust; 01425 463080. www.britishlivertrust.org.uk